Friday, November 21, 2014

Relax, it's not brain surgery! Oh wait, yes it is...

Me and my Abby Normal brain.

I had my follow up with Dr. Bolognese on Friday, November 14, via telemedicine (Skype). During that appointment, he referred to this image of my cine MRI:
Um...pretend this is animated, because it's supposed to be, but a screen capture is all I could manage.  Cine MRI=cinematic MRI; it shows the pulsation of cerebral spinal fluid, not just the anatomy. He said we need to see two columns of cerebral spinal fluid (CSF) pulsating on either side of the spinal cord. (CSF it the light colored lines outlining my spine, going up into my skull.) What we see is one line on the left (anterior) clearly going up into my brain, and the one on the right (posterior) going up and...stopping.  Where we should see CSF, it's black, indicating a significant blockage leaving that part of the skull starved of the flow of spinal fluid.  My brain herniation is plugging the flow of CSF at the base of my skull like a cork in a wine bottle, he said.  While the size of my herniation may be a cause of debate for docs, he explained any doctor with any knowledge of Chiari would look at this MRI and say, without question, I have a problematic Chiari malformation--not just an "incidental finding" as some may have said. Or, in fact, as some did say.

On top of this, my headaches are getting worse.  More frequent, more severe, more constant.  Truly, I have a near-constant headache now, often just a dull ache, but not uncommonly a throbbing, inescapable pain.  The one I have now is enough that it makes it harder to type, but I'm pushing through, because it's what I've done for so long.  One learns how to live with pain when it cannot be fought.  I'm grateful this one allows me to function, if in its own annoying interfering way.  Jerk.

Starting about two months ago, the headaches started getting so severe when I lie down on my back, adding pressure to the back of my head, that my eyes started going bloodshot.  The process of getting cine MRI pictured above, in fact, was absolutely torturous. They were unable to get the images they wanted, so it took three attempts and 45min instead of the 15min they had casually said it would require before beginning the imaging session. The pain in the back of my head grew intense, and unable to move during the test and relieve the pain and pressure, it swallowed my head whole, bringing nausea and severe eye pain with it.  Finally finished, I was dizzy a bit when standing but hobbled to my changing room, grateful to be upright again. It was when I was using the mirror to put my earrings back on (because you do NOT want to wear metal in an MRI--have you seen the video going around Facebook?) that I was taken aback by my eyes. They were red, from the outside corner to the iris. I continued changing, and the eye color improved as I was upright, but I grabbed my phone to document this bizarre visual.  It's a bit tricky getting a picture of one's eyeball with an iPhone, but I managed a few that somewhat captured the bizarre look.  
My, what pretty eyes you...ewww, never mind
 It repeated with the nasty headache I had after my son's Trunk of Treat Boy Scout event.
Appropriate for Halloween, I suppose
And really, has repeated to where it's a near daily occurrence--like my headaches, it varies in severity. Dude, the body is WEIRD.

Dr. B reassured (rather unnecessarily, as I wasn't concerned about it as much as I was curious) that the redness isn't due to a hemorrhage or anything like that, but are turning red like this as the nerves react to the pressure.  He said it was a bit like going pale when feeling faint.

On top of all this, I was diagnosed with sleep apnea back in September and fitted for a CPAP machine.  That's just...weird. Apnea?  Huh?  I've never had an issue with that, and I don't fit the typical profile. And yet, around February or so, my husband nudged me awake for the first time in our 13+ years sharing a bed to alert me that I wasn't breathing.  Whuh?

Turns out, both central apnea--where the compressed brain stem stops sending the signal to breathe--and obstructive apnea are extremely common in Chiari.  A study showed 73% of adult Chiari patients had one type of apnea or the other. (The good news? 90% of that group saw their apnea disappear after decompression surgery.) Thankfully, my type of apnea is obstructive, where the muscles in the back of my throat relax and collapse over my windpipe; while not fun, it's not as lethal as central apnea.  They aren't sure why this type of apnea is so common in Chiari patients, but one theory is the compressed cranial nerves interfere with the signals to the throat, causes the muscles to go lax.  This is also why some patients have issues swallowing, which I haven't noticed being an issue.  

All of these recent additions to my body's par-tay--the clear blockage on the cine MRI, the increased severity and frequency of the headaches, the eyes going bloodshot with the headaches, the sleep apnea--resulted in Dr. Bolognese offering me surgery. 

Brain surgery.

He cannot guarantee it will help all of my symptoms, as neurological issues are bizarre and unpredictable. But, he is confident it will greatly reduce my severe headaches, eye pain, and the feeling of pressure at the base of my skull. The dizziness, balance issues, limb tingling and numbness, tremors, hyperreflexia, joint and body aches, heart palpitations, vision issues, fatigue...a reduction (or erasure) of these would just be icing on the cake.

But still... EEK. Especially considering the procedure he recommends involves cutting out the herniated portion of the brain. He said it has not function, BUT STILL!

I asked Dr. B flat out about riding my horse, which I haven't done for a few months due to muscle weakness, numbness, spasticity, and balance issues. He recommended the same for both pre and post surgery for me--leisurely, walking trail rides only. (And that's him knowing I'm a somewhat skilled rider--otherwise he would tell a nonrider not to get on at all).  I cannot risk head injury or being bounced around much. This is both terrific news--I can get on him again!--and heartbreaking. I'm still processing the reality that brain surgery is in my future--this is just another piece that's terribly hard to swallow. Is it really...never again?

There's no knowing. For now, I'm grateful just to be able to get back on him, when I have the strength.

So I did.
I was still smiling on the way home
I have a friend's Barefoot Cheyanne saddle out on trial, and so far, I love it.  It's light, comfortable, and secure, and yet I still can feel him underneath me.  It's perfect for our 20 minutes of walking only.

Tril also looks adorable in it.
He looks adorable in everything, actually
Monday, shit got real when Bolognese's surgical coordinator called to schedule my decompression surgery.  She still needs to confirm with the hospital to make sure the OR is available that day at the hospital, but right now, my surgery is set for January 13, 2015.  In New York.


Our initial plan was to bring the boys along, but the more we think about this, the more we are rethinking that.  For one thing, there's the length of stay.  I need to be at the hospital on January 12 for presurgical testing, and I do not want to fly in on the 11th to dive straight into that.  So, we'll arrive the 10th, maybe, then I have surgery the 13th, then I have a 4-5 day night hospital stay, and then I won't be cleared to travel for at least two days after discharge--which means we'll be in New York at least 10 days.  A weeeeee bit rough on and with young boys.

New York--in freakin' January.  Yaaaaaaaay
I'm trying not to be overwhelmed by everything. The flight, the traveling itself, finding accommodations, the animal care, the boys' care (whether they're with us or not), the insurance headaches, the money--holy crap, the money--and lest I forget, the surgery itself.


One morning this week, feeling overwhelmed by everything and physically particularly crappy, I decided to sit in a corner of Tril's stall and sip my morning coffee, breathing and taking in the sounds of the birds and the horses eating their breakfast.

Of course, they had to thoroughly inspect it for carrots and peppermints
Worrying wastes my energy, which is in such precious supply. Breathe, be in the moment.

(Every now and then, that moment is full of EEK! and some tears, admittedly.) 

I have hope that my life can begin anew starting January 14.  Until then...breathe. (Freak out.)  Breathe.  (Freak out.) 

But--the day my surgery was scheduled, I had such a severe headache I couldn't freak out.  All that mattered was relieving the pain--and having something on the calendar, with relieving the pain as the ultimate goal, is actually...exciting.  Hopeful.  Scary as hell, but hopeful.

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